Autism and Worship
A Liturgical Theology
By Armand Léon van Ommen
Baylor, 263 pages, $44.99
In 2015, my wife and I were struggling to raise our two young sons to know Jesus Christ. Our children are autistic, mostly non-verbal, and diagnosed with intellectual disability. One of the big challenges this presents is how to participate in worship. They are not capable of sitting still for a long time, and they make a lot of noise. We tried worshiping at numerous places unsuccessfully.
Then one Sunday, at the suggestion of a friend, we attended a special “Inclusion Mass” at St. John Chrysostom Catholic Church in Wallingford, Pennsylvania. The experience was night-and-day different from other churches we had been to, or those we would visit later. From the moment we walked in the door, everyone we encountered greeted us with warmth and sensitivity. People with various disabilities were involved in the service as lectors, cantors, and ushers. When my kids needed to get up and move, they could do that. When they made noise, no one turned and stared, or shushed them, or shamed us for not controlling them. While this was a special event, the pastor later told me that the parish tries to maintain this level of inclusion at all its Masses. I left wondering why this was not happening in every church.
Armand Léon van Ommen thinks it should be happening in every church, and his book Autism and Worship offers a theological explanation of why. He believes that because autistic people are made in the image and likeness of God, the church should minister to them, and she is impoverished when they are not a part of her life.
The problem, van Ommen believes, is what he alternatively refers to as the tyranny, hegemony, and even cult of normalcy: “It is important to note that normalcy works by the dynamics of the economy of exchange by which we ascribe value to, and buy value from, each other. These dynamics emerge from deeply embodied frameworks that determine what is taken as the ‘good’ for life and for belonging.”
Communities determine what is normal as a way of regulating what it means to be a part of the community. This is often done in unnoticed and unofficial ways. No one, for instance, has ever approached me in a church and said that my son’s rocking back and forth is inappropriate, or that he should be operating at a certain intellectual capacity to stay in the room because otherwise things like the sermon and the reading of Scripture really are not meant for him. Nevertheless, we hear the message loud and clear from the reactions people offer to his presence, or even from the space, which is not conducive to the needs of people with special sensitivities to light, sound, and touch, as is true for many autistic people.
Van Ommen believes this tyranny of normalcy operates in the background of church life because “The assumption is that whatever is normal is good and whatever deviates too much from it is bad. … Human beings will always hope to belong and therefore try to fit themselves within the boundaries of what is deemed normal. In this way, the hegemony of normalcy becomes oppressive; it becomes tyrannical.” When churches perceive autistic people as needing to be either corrected or simply tolerated, their dignity is diminished.
The whole experience of worship can be brutalizing for autistic people. They may become overwhelmed by too many people interacting with them, not being able to follow a confusing or illogical order of service, or not being able to pick up on subtle social clues about acceptable behavior, in addition to their sensitivities. These things are not mere preferences, but part of the way autistic people process information and experience the world.
Van Ommen thinks what is needed is a ministry of presence in which autistic people are encountered and valued for who they are. “The autistic people in our churches are present,” he says, “and they require non-autistic people to be present to them. Presence is not an act of charity but a relationship of belonging to each other, by which we are changed and through which ‘we become more than we were before.’”
Van Ommen gives us a working picture of what that might look like with an extended description of the Chapel of Christ Our Hope. Founded in Singapore in 2012, the chapel is an Anglican parish that exists for the express purpose of being a community of welcome and belonging for autistic people and their families. Everything about the chapel is geared toward including autistic people, from the room’s simple design, to the lighting and sound choices, to the weekly lunch that provides for community-building.
Many of the parishioners felt like they could never participate in weekly worship until they found the chapel. Yet remarkably, the liturgy is not significantly different from what might be found in other Anglican parishes. This mirrors the experience my family had at St. John Chrysostom, where the liturgy was the same as in any Catholic church. “The answer to the question of how the lens of autism might reframe liturgical theology and the practice of worship apparently lies not at the level of the ordo of the liturgy, nor in liturgical or ritual actions,” Van Ommen writes. “This finding is worth highlighting in itself: it does not take a different liturgy to worship as autistic and non-autistic people together.”
Autism and Worship introduces an important topic, but there are some deficiencies in van Ommen’s approach, some of which he freely admits. First of all, though he is co-director of the Centre for Autism and Theology at the University of Aberdeen, he is not autistic. Van Ommen tries to make up for this by including a large number of autistic voices in his research, telling their stories as best he can, while acknowledging that he is an imperfect spokesman.
Yet not all autistic people are capable of telling their own stories. Van Ommen spends more than half of the book exploring the thorny topic of what autism is and how it relates to the concept of “disability” in general. Van Ommen offers a sensitive portrayal of this discussion’s history, including how autistic people differ over whether to be referred to as autistic or having autism, disabled or simply not neurotypical.
Ultimately, van Ommen comes down on the side of those who advocate for “neurodiversity,” arguing that the language of disability is not appropriate, that autism represents a different way of seeing the world and not a problem to be overcome, and that the primary lens through which we should see autism should not be medical.
I do not disagree with him on this. Autistic people have a great deal to contribute to the world, and their voices need to be heard. Except my boys’ story does not get told if I do not tell it. They cannot tell it themselves. My children are routinely forgotten, not just by the wider society but also by those involved in autism advocacy. Van Ommen notes, for instance, that surveys documenting the preferences of autistic people “often can (or do) include only certain people within the autism community—that is, those who are able to read and write. This excludes a significant portion of those in the autism community.” Yet van Ommen believes that these surveys should still be normative, and that “more research that is participatory is needed.”
Likewise, van Ommen dismisses the use of language about “autism spectrum disorder,” and particularly terms like “high functioning” and “low functioning” because “such a scale from ‘low’ to ‘high’ might have the connotation that people on the ‘high’ end are ‘almost normal’—that is, non-autistic.” This is a fair point, yet it also renders it impossible to describe the situation of my children in any meaningful way.Simply saying that they are autistic is not enough to express the profound nature of their challenges. In fact, it has the opposite effect, folding them into a classification in which what is “normal” is a different expression of autism that — for lack of any better language to describe it — is often called “high functioning.”
Elsewhere, van Ommen admits that “there remains a question as to what extent the neurodiversity movement can speak conclusively for those with high support needs,” but he immediately qualifies this question away by saying “a generous view of the neurodiversity movement has played an important part in highlighting the needs and the gifts of that group too.” He notes that a tension has emerged between some adults within the autism community who champion neurodiversity and parents of autistic children, but he does not recognize that one of the primary causes of that tension is precisely this inability to distinguish between different experiences of autism.
There is a famous saying in the autism community: if you have met one autistic person, you have met one autistic person. The experience of autism is very broad, and each individual’s needs and abilities are unique. Some autistic people are capable of doing incredible things in science, medicine, art, politics, and even in theology and ministry. There are also people like my sons who need help with basic tasks like going to the bathroom and brushing their teeth.
All of these are people made in God’s image and deserve dignity and respect. Until a new way of talking about the differences is found, though, autistic people who are like my sons are at a high risk of being erased from the conversation. The Church has a responsibility to address the needs of all autistic people, no matter how autism manifests in their lives. Van Ommen’s book runs the risk of unintentionally reinforcing the tyranny of normalcy in a different way by not recognizing the importance of these distinctions.
Still, even with the book’s limitations, it is an important and necessary step in the right direction. The church has failed autistic people in many ways, particularly when it comes to worship. The body of Christ needs all its members to be fully integrated, and for most churches that means that a new way of thinking must emerge. Autistic people should not have to fight for a special opportunity to belong within the church. It is incumbent upon all Christians, but especially those of us who are not autistic, to open our eyes and see those in our midst whom we have not previously recognized because of the gauze of normalcy that has blinded us.
